My Life with Stage IV Breast Cancer

Happy Breast Cancer Awareness month. Like many affected by breast cancer, I have mixed emotions about the notoriously excessive campaign that is Breast Cancer Awareness. From a whole population perspective I’ve always thought the month was a little over the top. I mean, do we need to see pink at EVERY athletic event? My feeling is that the message gets lost in the hoopla. I also feel that society recklessly over sexualizes breast cancer awareness. I just saw an ad on the back of a bus here in Madison showing a naked lady holding cantaloupes in front of her breasts (“save the melons”)…to promote “being vegan” as a way to prevent breast cancer. Yes, it was an ad promoting a vegan diet. And not that I have anything against the vegan diet, I’m sure it is a good idea overall and probably has been shown to reduce cancer risk. But I’m also sure plenty of vegans get breast cancer and I KNOW many breast cancer patients try all kinds of diets as last-ditch efforts to beat the disease and still die. So let’s settle down with all this “beating breast cancer through diet” talk that really just places blame on people with cancer. 

From an individual perspective, of course I appreciate all of the fundraising and awareness that has directly positively impacted my life. I can almost guarantee you I would not be here today without all the drug research that led to discovery of the life saving medications I have been on. It is not lost on me that my insurance, while not perfect or without delay, covers my medications and scans. Many, many women (and maybe a few men) have fought tirelessly for conveniences I now take for granted as a patient. In Wisconsin, for example, we have the Wisconsin Breast Cancer Coalition that fights for potentially life saving legislation for women and breast cancer patients. Most recently, Gail’s Law was passed by the state senate to ensure the necessary additional scans and tests are covered for women with dense breast tissue that renders mammograms less useful. While I didn’t have dense breast tissue, as a young woman mammograms were less effective for me and I needed additional ultrasounds to help diagnose my breast cancer. I imagine this additional testing would have been easy for me to delay a year or two had it not been covered by my insurance. And obviously in hindsight, another year or two may have made the difference between life and death for me. I definitely feel it is important to acknowledge and support the many programs that have helped me and so many others over the years. Some examples locally include Gilda’s Club, Breast Cancer Recovery, and ABCD (After Breast Cancer Diagnosis).   

I have been blessed with relatively good health for the past 7 1/2 years and thankfully my health updates have been fairly dull as far as metastatic breast cancer goes. I had a chest CT and abdominal MRI recently and the results were fairly similar to the scans from April. The spot on the liver was the same size (this surprised me as I expected it to either grow or shrink, just another example of the unpredictable nature of cancer) and some of the vertebral spots were slightly decreased in size, “due to treatment effects”. That was exciting, because as successful as I assume palbociclib (Ibrance ®) was for me, I was never able to really quantify the success because I essentially had clear scans after the radiation in 2018 and before the liver progression in 2024. Overall slightly positive news and we stay the course of continuing capivasertib (Truqap ®…I guess drug companies don’t have to follow basic grammar rules) and hormonal therapies, all of which I’ve been tolerating fairly well. 

Finally, this fall, after 7 years of intentions, I stepped foot into Gilda’s Clubhouse. I attended a couple group therapy sessions and I’m glad I did. I think a cancer diagnosis merits consideration of seeking out this type of support. As unique as each person and situation may be with cancer, there are many commonalities involved in a cancer battle. Any time someone would bring up an issue from treatment to family support to just general living with cancer, I could either completely relate or at least have some sense of empathy about what they were going through. It was good and I think this will be a good additional support in my fight.   

Let’s face it, we are all going through something. Sometimes we just need to be in community with others who can relate. I’m hoping Gilda’s Club can be that for me.

March was my 10 year cancerversary and 7 year metaversary (okay, I completely made that word up, but 7 years since the cancer appeared in my bones). Pretty impressive considering Google still tells me the 5 year survival rate is 32%. I’m definitely beginning to feel I’m on borrowed time, which doesn’t really feel good or bad, it just is. Also in March my oncologist recommended an abdominal MRI and chest CT to assess the effectiveness of my new treatments. The results were okay. I say that in the most annoyingly boring way possible–very “meh”. The small (0.9 cm) spot on my liver was still there, exactly the same size as it was 5 months ago. The spot on my vertebrae was also still present, along with some other smaller areas of suspicion. Following up with my oncologist, he was overall happy with the results and informed me that any of the smaller “new” spots on my vertebrae were probably there in October because bone imaging tends to lag behind other organs, for whatever reason. That means right now we stay the course. Images aside, if there’s one thing that’s been reinforced in the past 6 months for me, it’s that changing treatments is a huge pain, so short of some obvious growth on the scans or quality of life issues (from cancer or the medications), I will probably not be rushing to change things up. 

While overall I would say this news was more positive than negative and I continue to be pain-free, I don’t feel great about the results. To have clear, “cancer-free” images for the past 6 years and now to be living with visual spots of cancer is a bit of a downer. I am also, by my own design and preference, my own advocate and “head of cancer communication” and sometimes it just feels overwhelming. Especially when the news isn’t that great. It’s sad work.  

The other issue is adjusting to what lies ahead, health-wise. As I wrote about before, I’m approaching the finish line of my 50 state race goal, with 4 left (Hawaii was wonderful, by the way, absolute paradise). I have a big trip out west planned this summer to complete races in Wyoming, Montana, and Idaho. Between that trip and Hawaii, I will have done a lot of travelling in 2025 and my hope is that I can hold off finishing in Alaska until 2026. This makes me a little uneasy because ever since these new spots on my spine have shown up, I’ve had increased apprehension about the timeline and what my health and mobility will look like in 2026. I was hoping that this last scan might provide me some definitive reassurance, but as with all things cancer-related, it was really “clear as mud”. Running aside, just in life in general in the past 6 months I’ve felt untethered. Now that I’ve rolled back some of my volunteer work and goals for future employment, I’m feeling a little empty and it is difficult to navigate this feeling without feeling dependent on my health, which seems to be undependable. 

And just so I don’t leave this hanging on those Debbie Downer thoughts, I’ll end with some more upbeat topics.

Craft Corner

Every month when I go to the infusion center I take note of what books, crafts, and knick knacks they have on display. The spring craft was an assortment of tiny pillows with velcro attachments. I took one, as you can see here.

I asked the person attending the desk what the purpose of these tiny pillows was. Surprisingly, the tiny pillows actually had a great benefit. They were designed to help decrease the discomfort caused by various things (namely seatbelts) continually rubbing against a port. Ports are commonly used in cancer patients to help administer harsh chemotherapy directly into a larger vein as to decrease damage on smaller, more fragile blood vessels. Ports usually protrude to an extent where I could totally understand why seatbelts might be an issue. I briefly had a port in 2015 when I had intravenous chemotherapy. I don’t remember it being an issue with seatbelts, but I definitely am sensitive to seatbelts touching my clavicle and this tiny pillow really helps with that. So while the seasonal craft was once again odd, I found it helpful this time around and also appreciate that the waiting area was staffed with someone who helped me realize the benefit of what again seemed like a frivolous crafting project.    

“Dying for Sex” Review

I recently stumbled upon “Dying for Sex”, a new show out on Hulu about Molly, a lady diagnosed with stage 4 breast cancer. Overall I really liked the show. Michelle Williams and Jenny Slate are wonderful actors and I completely identified with Michelle Williams’ portrayal of Molly. Throughout the show she had this perpetually distracted, inward leaning disposition. I’m not sure if that makes sense to others, but I related to that. I feel that almost every day. There’s a kind of self-obsession that happens once you start having medical problems. It’s weird and I don’t like it, but I feel it.  

The storyline is about Molly’s desire for sex, so yes, there are quite a few scenes that make the show awkward to watch if your television is in a common place in the household, like ours is. And no, I really can’t say I identify with Molly’s paradoxical increased libido. But I feel like that’s not really the point of the show. What Molly wanted (and I think what most of us in this situation want) was to be treated like a human, not to be viewed and treated as the sad “project” that her spouse needed to martyr himself for. I loved watching this show because I felt it showcased so many issues we face as cancer patients. The waiting (“cancer is 80% waiting”…so true), the disconnect with medical staff, the premature menopause, and all the thoughts and feelings that go into living authentically in a world where the immense gray space that is cancer doesn’t really fit. I would recommend this television series to show insight into terminal breast cancer, with one big caveat: I feel it is overly dramatic and spoiler alert…it made me really sad that it will only be one season. I was looking forward to a multiple season showcase of the long, slow progression that can be so mundane that it is truly impossible to “hold space” for someone or even remember they have cancer. Certainly that would not make for good television, though, so most everything that a typical patient would experience was condensed into 8 short episodes and it made it seem like everyday is a new tragedy in the world of breast cancer. And that is just not the case. Most of us go through months, if not years of calm before the cancer strikes again, chaos ensues, and we are once again in full battle mode against the disease that continues to outsmart humanity.

I expect to give a health update after my next scans in April. So far I’ve been tolerating the new medication regimen pretty well and I’m hopeful that it is working. In the meantime, spring is almost here and I have some fun things on the horizon.

Shortly after my metastatic diagnosis I set a goal of running a race in all 50 states. On March 23rd, I will run a race in Hawaii, my 46th state. At the time, I wasn’t sure if the 50 state goal was a great idea, but I knew it was relatively low risk, high reward and would not only allow me to pursue two of my passions, running and traveling, but would also force me to be more intentional with how I spent my free time. After all, time is our most precious commodity, especially as we get older and/or sicker. After running in 40 states over the past 6 ½ years (5 were completed prior to 2018), I feel really happy that I am on this quest. I’ve visited places and seen things that I know I would otherwise not have by the age of 45. And while my boys and husband definitely don’t share my enthusiasm for running or traveling; they have, by default, also seen and experienced things that I’m pretty sure we wouldn’t have made it to by this point, including Acadia National Park in Maine, the Oklahoma City National Memorial, and the U.S. Space and Rocket Center in Huntsville, Alabama; among many other things. We definitely wouldn’t be going to Hawaii at this point in our lives. 

The ability to go out for a run is not something I take for granted. Watching a red carpet interview recently, the actress Felicity Jones was asked about going for a morning run and replied that her day could not start properly without a morning run. I can identify with that completely. I have not been able to run at different points in my life for different reasons: bearing children, surgeries, and injuries among them. Fortunately I was generally able to substitute running with walking most of the time, but for me, it isn’t the same. The feelings produced by the endorphins released when running are probably the main contributing factor to my enjoyment of running. And while I’m definitely not in peak athletic shape, I think my experience with running has enabled me to find a sweet spot while running where the workout is intense enough to release endorphins, but easy enough to be relatively painless. That’s a pretty special situation that I know I couldn’t achieve in other aerobic sports such as swimming or biking. With running I have found my peace. I found the feeling I assume others feel in meditation and yoga. The athletic component is a bonus. The other bonus of running outdoors like I do is that I get to view nature’s beauty daily. Almost anytime someone posts a picture of a sunrise in the Madison area, I can say I viewed it first hand on my run that morning. 

I just realized I’m getting a little too high on running and probably painting an artificial picture. In full disclosure, what I truly need to get my day started is a half pot of coffee. Then I have to give myself a pep talk, almost every time, to go outside, face the elements, and get moving. I, like most other humans, would take lying on the couch any day over running. Running always feels better once I get a minute into it. Running is definitely a situation of choosing enjoyment over momentary pleasure, of stepping out into the elements with the knowledge that soon my mind will be good and the endorphins will be flowing. Everyone is built differently also. Even veteran runners like myself need to assess what their body will give them. I used to run marathons (26.2 mile races) and now I doubt I could hobble through a half marathon, I just take what my body gives me. 

Running as a hobby does have a couple of downfalls. First, most people can’t run forever. Second, I don’t really feel like I bring anything to the table while running. I don’t produce beautiful music or artwork with my hobby. I don’t make anything like someone who takes up knitting or another craft might. I think that’s why I’m always a little reluctant to talk about running, it can seem selfish and wasteful. That being said, one underlying positive of running is community connection. While running seems like a solo, lone wolf sport, I find myself intertwined with every neighborhood and route I run. I know every community I’ve ever lived in as a runner. I know the houses, the trails, and, in Iowa especially, the fields. I recently told my son that growing up as a runner in rural Iowa, I ran towards the nearest cornfield and just kept running. While we ironically probably live closer to a corn field in our Madison location then I did in my “town” house in Estherville, corn fields are somewhat of an enigma to my boys. I think what my son imagined when I said surrounding myself with corn fields was literally running through corn stalks like bamboo stalks in a jungle adventure movie. Rest assured I didn’t not actually trespass on farmland and destroy a local farmer’s crop and livelihood. I just found a gravel road, quieter than you could probably imagine if you’re not familiar with rural America, and lost myself in the corn, sky, and gravel. As a student in college towns like Ames, Iowa and Madison, Wisconsin, I missed the convenience and nearness of the fields I had grown to love in Estherville, but I found updated trails all over both cities that almost always followed a river or lake that could serve as an adequate substitute. Finally, before circling back to living in Madison, I spent some time as a pharmacist in downtown Milwaukee. I would say I hate running through busy streets and traffic lights to the same extent I love gravel roads. But the prize at the end of about 10 minutes of suffering through the noisy, start-stop chaos that was downtown Milwaukee was the beautiful Lake Michigan and the endless miles of trails and parks that bordered it. The Great Lakes are a treasure to the upper midwest and I will always appreciate the fact that Wisconsin borders two of them. 

And now, with my 50 state race project, I’ve gotten to experience communities all across the United States through my running eyes and with my running feet. I’ve run through college campuses, large and small; local parks; suburbs and cities; open fields and busy highways. Through running the races I’ve also contributed to many local causes: scholarship funds; local recreation clubs, and various awareness campaigns supporting infants, cancer, and everything in between. So, in that, I don’t feel like my love for running is all for nothing. Every time I finish a race in another state is a cause for celebration. While I can’t always control or prevent the negatives in this crazy life, I can add positives and that’s what running does for me.

This is really just an essay to help me cope with cancer by airing my grievances about small issues that come up routinely in healthcare. No real updates to share. I have now started all medications and seem to be tolerating them well. Because my oral medication was delayed due to insurance, I got a break from taking daily medications over the holidays (we also spent a wonderful week in Florida and on a cruise ship where we got to escape reality and focus on the expansive blue ocean, it was heavenly). For a few weeks, I forgot about the cancer battle, it was nice. 

I write the following not to elicit sympathy. My hassles with my cancer care are minor in the grand scheme of things and not unique to me. These slight inconveniences just add up and writing about them is a great way for me to process and move on. I’m guessing others feel the same and I would love to hear those stories. The following is also not to ask for advice or a recommendation of a “better” clinic. This is literally just venting and rambling. And fair warning, this comes across pretty negative. I’m not generally that negative. I haven’t taken a “turn for the worse” and given up. I just hit a bad patch with the clinic and I’m sure things will get better as we get into our routine with the new plan. I also realize there are way bigger problems in healthcare than what I’m writing about. While I definitely recognize and have dealt with those issues also, that is beyond the scope of today’s post.

The New and Unimproved Cancer Center

The cancer center where I have always received care moved to a new location recently. It’s really a huge positive for me because the new clinic is about 10 minutes closer to my house and it is also on the outskirts of town, so less traffic and better parking. The part I don’t like about the clinic is that it seems really sterile. All the waiting areas are in large atriums (very open concept) and the offices (even scheduling offices) are closed off behind doors, so it feels like the entire hospital is a large barrier between the staff and patients. To me it comes off as very unwelcoming. The infusion center is another issue altogether. First of all, there is not enough seating. I think they forgot that many cancer patients bring caregivers with them and the end result is that really sick people might not have a chair to sit on while they wait (usually quite a while, because that’s how the infusion center rolls) for their treatment. What really annoyed me was that not only is the whole area very white, sterile (think fluorescent lights), and gives off an institutional vibe, but I guess to combat this, they haphazardly threw some books and knitting projects on a shelf. One was a book entitled 14,000 Reasons to be Happy or something like that. I’ll tell you how to be happy, don’t hang out in that God forsaken place. They should have a book entitled “You have cancer, it Sucks, your life sucks, and we’re making it even worse with our lack of awareness of your time and our stupid seating area that doesn’t have enough seats”. Then, on top of that they have some pieces of…not sure what to call it…knit-ware?… that I guess someone knitted who thought, hey cancer patients don’t need anything of quality. Sure, they had a few knitted hats. Those are fine. I’m sure in the world of knitting, a hat is quite a feat. And I guess it makes sense for patients losing their hair. But, far more prevalent in the other bin, were small knitted squares. Not small blankets, like 8” x 8” squares. What Thee Heck. What are they doing, throwing their crap projects in the area where cancer patients don’t even have a spot to sit? It’s insulting. What is one to do with a small, knitted square? Sure, if my son or parent had knitted it, but some random knitter thinking they’re saving the cancer patients with their squares? Ugh…and to make matters worse, during my first visit to this painfully poorly planned infusion area, someone forgot to put my order in. This meant I waited there for about an hour, watching people going in and out of their appointments like I was some creepy lady who didn’t have anything better to do with my time all because no one put the order in for my treatment. I should mention also that the clinic was crowded and visibly behind (I almost lost out on one of the few remaining chairs and was close to making a floor seat cushion out of four of their knitted squares). The nurses were running around frantically, so it felt pointless and borderline rude to ask why the wait was so long. I definitely learned my lesson, now I triple check to make sure someone put the order in before heading to infusion. 

Scheduling Fiascos

 There are lots of moving pieces in starting a new treatment regimen. While every oncologist has been on the ball in terms of getting things scheduled, creating treatment and follow up plans, and ordering new drugs and labs; the bottom line is that the best person to really manage and understand what things need to happen is the patient. An oncologist (or any specialty doctor really), just doesn’t have the bandwidth to obsess over medications, appointments, and scans like the actual patient. I would say as a pharmacist I have a little bit of an intuition as far as knowing what information to focus on, but any motivated patient (and luckily many patients are fairly fast learners) can quickly figure this stuff out. One thing that always seems to be messed up from the get-go is when to schedule follow-ups. I think part of that is due to the inability to predict when medication will actually be started. The most difficult situation is what I most recently experienced where I was prescribed an oral medication that took weeks to get insurance approval. Even an inpatient medication, like intravenous chemotherapy, can be tricky though. Many times insurance approval is needed for those medications as well and administration is also dependent on the infusion clinic’s schedule. This almost always results in my first few month’s worth of labs and visits being messed up and while I know it’s part of the game, it’s annoying and it’s difficult to give grace when it happens repeatedly. Shortly after the scan and then biopsy results indicated the cancer was awakening and we needed to get on with finding a new regimen, the scheduling team repeatedly only offered me appointments that were later than what my oncologist had indicated. In both cases, we had to reschedule after someone from the team informed the receptionist that what we had on the books was too far out (it is cancer after all, not cosmetic surgery). The other issue was follow up appointments that made no sense in light of the insurance fiasco that caused my medication to be held up for almost a month. No fault of the clinics (at least as far as I know, but who knows how long paperwork sits on people’s desks), but where they did drop the ball was not realizing this until 15 minutes before my appointment. Yes, you look pretty silly calling a patient 10 minutes before their appointment to tell them not to come in (spoiler alert: I was already “in”, I took the call in the clinic). 

Goserelin (Zoladex®) to continue or not to continue. And…which Z drug is it?

I have had a variety of estrogen receptor blockers and modulators since my cancer was first discovered as ER positive in 2015. I was on the modulator tamoxifen until the 2018 recurrence. At that time I was switched to a more heavy hitting regimen, letrozole (Femara®) to help my body stop making estrogen and goserelin (Zoladex®) to stop my ovaries from producing estrogen. When my cancer reappeared a few months ago, my oncologist recommended changing to a slightly different tactic with regards to estrogen since it seemed the cancer had again outsmarted my medication. I started fulvestrant (Faslodex®) to hopefully trick the cancer cells with a new estrogen receptor modulator. This drug is given as a monthly injection and boy, does that first injection mess you up. My hips (the place where the injection is given) hurt immediately. Then my whole body felt sick, dizziness and nausea swept over me simultaneously. Luckily the second injection was better. What I noticed in my treatment plan was that not only was the letrozole to be stopped, but the goserelin also. This was a little confusing to me, since unlike letrozole and fulvestrant which act on the body as a whole, goserelin only targets ovarian production of estrogen. This led me to question why we would let my ovaries “start up again” after essentially I had reached a place of being comfortably postmenopausal. Cancer aside, it seemed like we might be playing with hormonal fire to an extent. I’m 45, so would I indeed go back to pre-menopause, only to go back into menopause naturally? Or would I just stay postmenopausal anyway at this point? Either way, it seemed like a reckless roll of the dice with my hormones and I didn’t like it. Long story short, I contacted my oncologist and we got the goserelin (Zoladex®) added back to my treatment plan. Here’s where the fun starts. A receptionist called me to schedule the goserelin which I will now just refer to as Zoladex® for story telling purposes. The tricky part is that Zoladex® is given every 12 weeks, which would have put it due 1 week after the Faslodex® and in theory this would continue as long as I received both drugs because Faslodex® is every 4 weeks and Zoladex® every 12, so they would always be a week off. Part of my cancer-stress management involves minimizing the amount of appointments I have. This is tricky. I swear I would probably end up going in for something multiple times every week if I didn’t stay on top of micromanaging how the team schedules my appointments. As it turns out though, we had one much more disturbing hurdle to cross first. When the receptionist called, she told me she needed to schedule my Zometa®. Zometa® is a completely different drug. It is for osteoporosis but many times used in cancer patients with bone involvement. I had been on it previously, but discontinued due to risk of serious side effects with extended use. I initially just let it go, because after all she’s just the receptionist, it’s not like she was actually giving me the drug right then. However, she followed up with, “now this is a 30 minute infusion”. Wrong. Just totally wrong, wrong drug, wrong administration (Zoladex® is an injection, not an infusion), wrong time frame. So, I reluctantly called her out. Nope, wrong drug. Then she proceeded to tell me it was the same drug, just a different name. Nope, wrong again, they are totally different drugs. Okay, fine, she went on to mumble something about “grabbing the wrong Z-name”. I kid you not, this actually happened.

And that’s it. If you’ve stayed with me until the end, you are probably the only one, but rest assured I feel 100 times better:).

I am excited to give another great update!  My most recent PET scan looked good, no signs of new or recurring metastases!  This was actually my first PET scan since the lung infection debacle of 2020.  I’ve had CT and bone scans since then.  In March, it will have been five years since I was diagnosed with stage 4 cancer.  And if my next one or two scans look good, I will essentially hit a 5 year “No Evidence of Disease” mark in August.  Also in March, it will be 8 years since I was first diagnosed with breast cancer. 

I also met with my new oncologist.  As much as I like the convenience and University of Wisconsin affiliation of my oncology clinic, it does not seem to retain its talent all that well. Three of my oncologists have left the clinic in the past 5 years.  The good news is that I like this oncologist and we had a good conversation about the cancer.  We discussed the fact that I have a somewhat common mutation in my breast cancer, PIK3CA.  This is good news for 2 reasons.  First, I have some 2^nd line therapies that are approved for people with that mutation, in the event I need it.  Second, people with that mutation seem to do fairly well on the medication regimen I am currently on.  My oncologist told me that his “unicorn” patients (people that outlive their life expectancy) generally have this mutation. 

Good news all around. While back in 2018 I didn’t necessarily think I’d be dead in five years, I did think the cancer would have spread by this point and I certainly did not think I would be enjoying the quality of life that I continue to have. For the past almost 5 years I have not let myself imagine, plan for, or hope for a life after 50 and now I honestly believe it is reasonable for me to entertain thoughts of a more long term survival. This is a true game changer for my outlook on life and life choices.

As great as it obviously is, I am slowly realizing I need to go back to “adulting”. Of course I was always stuck very much in adult mode and never really broke free and made rash, crazy decisions. However, one way that I coped with the trauma of a terminal diagnosis was to embrace the freedom of releasing some of the burdens of middle age. For example striving to get ahead in the workplace, limiting my spending in hopes of a heftier retirement fund, and letting go of some of the trivial minutiae in life that can steep in and bog us down (probably should let that go anyway). I threw myself a huge 40th birthday party and never would have done that had I thought I’d make it to a 50th birthday. This is not to say that all of those are not very reasonable ways of coping and the stress of the disease and treatment in many ways takes “adulting” to a whole new level. But it’s just different and an adjustment. A good adjustment, of course, one I am very thankful for, but there are definitely some mental and psychological gymnastics going on with each scan and appointment.

At this point my treatment plan is continuing as normal and my scans will continue every 6-9 months. As I start to enter this wonderful uncharted territory of “unicorn patient”, I’d love to get off of my medications and decrease the scans. There isn’t enough data, however, at this point to support the idea that this would be a safe move. Fortunately my medication and scan regimen is about as easy as it gets for someone in my situation. I will continue to count my lucky stars and enjoy the physical health I have been gifted with.   

First of all, happy Breast Cancer Awareness Month! It’s a time of year to give the gentle reminder to keep up on whatever type of screening is age/risk appropriate for you (my lump was found during a routine physical), support the wonderful research that has greatly helped me and other survivors throughout the years, and just celebrate those of us who have been surviving and thriving with this disease and the friends and family who have helped us on our journey.

I originally started this post because sometimes I struggle knowing when to set boundaries for my own personal time.  I quickly realized, however, that we can talk about boundaries a couple of ways:  setting boundaries for ourselves and our own wellbeing (my initial thoughts on boundaries) and setting boundaries with others.  I’m going to start with setting boundaries with others because I feel that is more on topic with cancer.  I’ll dive into setting boundaries for ourselves in my next post.  I Googled boundaries and here’s what came up for “examples of boundaries in relationships”:  saying no, expecting respect, not taking blame inappropriately, respecting other’s privacy.  Sometimes it’s just hard to know when to set a limit or say no.  One example I heard on Glennon Doyle’s podcast was setting a boundary of only seeing a close friend during daylight hours.  Apparently in that relationship, things tended to go awry at night and therefore nighttime hangouts were avoided to preserve the friendship.  Many of us have those friends that we just can’t talk sports or politics with because we feel so strongly and it’s an “agree to disagree” situation. Texting and other direct messaging is another common example. Generally we avoid texting people at 3 a.m. to respect sleep boundaries.

Like all of us, my personality type gives a lot of background on how my boundaries work.  I am a very classic introvert.  I can be nervous and uncomfortable around others.  I think more accurately, I am a Type 5 personality in the Enneagram.  For those of you that don’t know about the Enneagram, you can get an overview and test here.  As someone who has always hated personality tests, I can honestly say I LOVE the Enneagram.  I feel like it gets me in a way no other personality test does (as a disclaimer I will say I took the test without knowing the personality types and I think that gave me a more authentic result and I, like most people, test strongly in multiple types).  It really shows each personality as an asset to our society.  As the old saying goes:  It takes all kinds.  I will also say that learning others’ Enneagram Types can really help a relationship.  For example, while my husband never has and probably never will take the Enneagram test, I noticed parts of some characteristics in him that I had never thought about before.  For example, he definitely has components of the Type 6 persona …specifically “the biggest fear being unprepared and unable to defend themselves against danger”.  When I think of some of his most aggravating, annoying traits to me, many stem from this part of his personality and seeing it as part of his personality and a legitimate fear, rather than him just being a jerk, helps me give him grace at times that I would have otherwise felt frustration and anger.  I digress, back to boundaries.  For a Type 5, like me, our biggest fear is:  “being overwhelmed by their own needs or those of other people”.  In other words, Type 5 people are CONSTANTLY setting up boundaries.  I would say this is one of the biggest downfalls of a Type 5 and unfortunately why many Type 5s struggle to connect with others.  Years ago I would have said that some people just don’t really need to connect to others, but all humans need and crave connection, to different extents and in different ways, and this is a constant battle for Type 5 people.    

Back to cancer and boundaries, multiple boundary-type issues come up with cancer.  First and probably most obvious is the multitude of really kind people that will come out of the woodwork with all kinds of offerings of help, meals, cleaning, babysitting, care baskets, you name it.  I’ve said this before and it’s worth repeating, I was flabbergasted by just how many thoughtful and giving people helped me through my different struggles with cancer.  What also became clear to me from the get-go was that I needed to establish some boundaries of what I really needed and was comfortable receiving.  There are definitely many people who find themselves with a medical diagnosis that they cannot afford and that is truly crippling to their lives in ways other than just the medical and physical hardships.  They don’t have insurance, help with child care, a job with benefits that allows for medical time off, access to good nutrition, transportation to medical appointments, etc.  I have never had any of these hardships and needed to make that piece clear to anyone that might be wanting to help set up any type of fundraising that would definitely be helpful to others in my situation, but not for me at that time.  As somewhat of a tangent on this topic, I’d also like to stress how helpful it can be in these situations, when things are just getting heated, to have a “help” point person that is not the actual patient or their spouse/primary caretaker.  A quick assessment of what someone needs and the ability to serve as a point of contact for anyone that might reach out can be really helpful. 

Yet another part of boundaries is trusting that those around you will be aware of their own needs and limitations.  This can be tricky and uncomfortable especially for the Type 5s among us who aren’t particularly good at social nuances and just assume that others will know when to say no and feel comfortable saying no. Ideally when someone offers help, it will come from a place of legitimate good will; not feelings of guilt, indebtedness, social pressures, or control issues. Back to the Enneagram, there is actually a personality type called “The Giver”, it is Type 2. This personality type lives to serve others.  Nuns and nurses often fall into this category, but I think many people have this trait in them.  While givers are such an asset to society and truly excel in making others feel loved and taken care of, their gift (like all other gifts in the Enneagram) can turn unhealthy at times. The potential problem with givers is that they can overwhelm with their giving and it can be hard to connect with them if they are unwilling to accept help themselves.  After all, everybody (even us curmudgeonly Type 5s) loves to give.  As humans giving to others makes us feel good and connected.  Thus, a total martyr, I’m-going-to-fall-on-my-sword-for-humanity type, can alienate themselves from others by the very thing they do to make themselves “lovable”, giving to extremes.  In the cancer world, we tend to encounter many givers.  After all, even at our healthiest we interact with nurses A LOT.  And many of the givers in our lives will seek out ways to help us out.  Thus, my advice to a new cancer patient would be to be ready to encounter this type of personality, be direct and clear about expectations, and especially if you are like me and maybe a little uncomfortable with receiving help, try to open yourself to accepting it.  There are some truly special and inspiring moments to be had as a cancer patient, if you let them happen.    

My health continues to be good. Unfortunately due to the chronic, unpredictable, and ultimately terminal nature of metastatic breast cancer, feeling healthy one day doesn’t guarantee anything about the next day and for that reason I have decided to take a step back from my job and am currently enjoying a more laid back existence. I knew this day would come four years ago when I was originally diagnosed as metastatic and I had hoped that it would come early enough in my diagnosis for me to continue a high quality of life and that I would feel at peace with my decision.  As one of my former oncologists said “It’s hard to know when to say when”.  I cannot say I am totally at peace with my decision, some degree of embarrassment and shame still lurk, but I can honestly say I feel better and better about the decision each day. 

Multiple factors are at play when a woman of my age, with my family life, and my work situation gets an unpredictable, ultimately terminal diagnosis. Side note: If you are wondering why I would throw around the word terminal when I’m obviously not packing my bags for hospice, there is an article you can find here, written by Abigail Johnston, a fellow metastatic breast cancer patient who writes a great blog about life with metastatic breast cancer. Mentally and emotionally I immediately went to a place of panic about having a much smaller number of years left of this earth than I had planned for.  This led to a sudden disinterest in going to work.  I couldn’t shake the vision of continuing to burn myself out at work only to get massively and dramatically sick for a few months, then die.  The second and probably most significant factor at play was simply the issue of time and lack of ability to schedule all of the necessary appointments around my fairly inflexible job.  One of the most important attributes of a nuclear pharmacist is the ability to show up.  There are no “substitutes”, there is no “save for tomorrow”.  You need to get a short-lived product out to hospitals STAT and there is literally almost no one else trained to do your job.  For me to schedule an appointment meant taking a day off months in advance.  There is no calling in sick.  That would literally be asking my co-worker to work a double shift at the last minute.  Finally, the combination of full-time work commitments and kids pretty much maxes a person out, there is little to no room for other demands.  I tend to beat myself up for this, but given the expectations we all put on ourselves, very few people are equipped to take on a serious medical condition (or for that matter any number of life-changing events, death of a loved one, divorce, job loss; whatever it might be). We don’t give ourselves much wiggle room in this society, we run ourselves pretty ragged.  What I noticed happening on a regular basis was that the variable constantly getting cut out of my life was my kids.  Because I am blessed with lots of help from both my family and my husband’s family, time with my kids was the easiest thing for me to carve out of my schedule and became the go-to way to solve the ever-present problem of timing/scheduling issues.  This is tricky as a parent.  My kids love their grandparents and aunts and vice-versa.  My kids get great care from extended family.  My husband is also a very present father to them and helps immensely.  By all accounts, everyone was doing great, if not even better than if I was always available to my kids.  But I had reached a point where I just couldn’t do it anymore.  The combination of pandemic life and my lung infection last year probably accelerated those feelings.  The anxiety of scheduling appointments and feeling under the weather all came to a head in the fall of 2020.  The kids started the school year virtually (and continued that way until April 2021) at the same time I was spending literally 10 hours a week at the hospital trying to start a clinical trial and then trying to re-diagnose a painful abscess in my ribcage.  It was taking well beyond too much of my time and energy just to manage my job and health condition.  There were several instances where I literally had to be three places at once. I think I would have tried to just “tough it out” if 1) I weren’t diagnosed with a condition that requires I undergo active treatment for likely the rest of my life, active treatment that causes issues like the lung infection I suffered last year and 2) I wasn’t diagnosed with a condition that as we know it right now will likely take my life within the next ten years.  At the expense of seeming like I’m being melodramatic or feeling sorry for myself, these are the facts and the time had come to make a decision of how to manage the cards I’ve been dealt.   

The two things that have really thrown me for a loop with this decision were the reactions of others and the reactions from my kids.  I have not kept my diagnosis private.  I feel like if anything I error on the side of being too open about my health and I fear I’m coming off as too melodramatic and self-centered when I write or talk to people about my health.  Unfortunately, the most logical question that comes up when I tell people I am not working at the moment, “What are you going to do?”  is the one that for some reason I was totally unprepared for.  Of course people are going to ask that, makes total sense.  But in my head I’m always thinking… “What do you mean, ‘What am I going to do?’?!?  Have cancer and have a family.  That’s PLENTY for me!”  Then, in the beginning at least, my mind would start to go down the dark rabbit hole of wondering if I am lazy, worthless, uninspired.  I’m getting a lot better with that question and honestly, I realized pretty early on that a big part of why people have this reaction is the way that I tell them the news.  I appear healthy, haven’t said anything about the cancer in a while, and am generally just saying it casually as one would when they are just looking for a new job or making a life change.  I was discussing my wonderment at different reactions to my news with a friend who left the medical field for similar reasons.  She passed along some wise words from a health psychologist:  When you share this news, people are going have all sorts of different reactions and for the most part it’s a reflection of their relationship with working in general, not some sort of judgement on your life choices.  I think this is really good advice and I bet it applies to many other life decisions (having children, raising children, medical decisions and treatment, financial decisions….really everything). 

As much as I tried to prepare my marriage for this big life change, I completely overlooked the reaction and feelings my kids might have.  I was really nervous about how quitting my job might affect my relationship with my husband.  In my 16 ½ years of knowing him, I have never been unemployed. For a variety of reasons (probably my own mental health as much as money) it has always been a priority for him to keep me working and he has always gone above and beyond helping out with housework and the kids to make that happen.  Like most couples, money is always a potential source of conflict with us also and so I feel I overcommunicated with him and was overcautious as I made this decision.  With my kids, however, I just took for granted that they would be either unchanged or if anything happier.  I guess I assumed I would be a better mom, more present, and able to provide a more stable environment by not working and of course they would just accept it and be happy.  I completely overlooked 1) the fact that my identity to them was a working mom and 2) they also have concerns about money. I guess I just lumped all of my stress and frustrations of being a working mom in together with their stress and frustrations and assumed life would be easier for all of us if this working piece was out of the puzzle.  But truth be told, I think from their perspective, having a parent suddenly not have a job is just as much of an adjustment as having a parent suddenly start working.  And I totally dropped the ball when thinking these things through from their perspective and preparing them. 

I think what really scared me about the possibility of leaving my job was the confidence and self-worth that it gave me. Recently, in People magazine, Kenny G (Yes, the 65-year-old 1990’s saxophone-sensation/popstar Kenny G and yes, the magazine was dated February 4, 2022, and yes, I realize the fact that I’m reading Kenny G articles in People magazine is not a great look, and yes, he still looks like the amazing curly-haired, chisel-faced heartthrob he always has.  I’m not sure what skin and hair products he uses, but he should promote them.) stated: “Getting good at something will give you a lot of confidence.”  Simple enough, but I think this comment states what my job provided to my life in a nutshell.  I was good at my job.  I had confidence that bled into other areas of my life.  If ever I was feeling unsettled or bad about the way another part of my life was going, I always had my work life to fall back on.  At the back of my mind, I could always resort to:  well…they should see me at work, I am an invaluable team player and I make a difference in my workplace.  And herein lies the issue, I am not an innately self-confident person.  I am cautious and timid and question myself excessively.  Experience and expertise in a setting, like my job, is huge for me and where another person might be able to “fake it til you make it” or even gain this level of confidence in a short time, it will take me years of work and experience in a role to feel comfortable.

As I start my journey in this new adventure, I am pleasantly surprised that I don’t feel as worthless as I thought I might have.  While that is definitely a positive, one struggle that I have is the movement into more of a gray space of life.  I do not do well with soft skills, I function best in the black and white.  With my job, I enjoyed defined expectations, metrics with a “gold star” at the end.  While we all need to manage the nuances of communication and relationships in any job, I feel my job allowed me to perform in a space above a lot of that.  Are you putting out product, making money, keeping customers and coworkers happy?  Yes or no, easy.  On the other hand, as a parent, wife, daughter, sister, friend, and volunteer, the judgment is much stickier.  I have never in my life felt like I was performing well in any of those jobs.  Another aspect of this gray space is that now I am charged with being completely responsible for every minute of my day.  With a job, you just go to work.  It can be really hard and frustrating, but it is planned for you.  Moving to being unemployed, I now have full control over how I spend my time.  Stressed, frustrated, burnt out?  Umm, that’s on me now.  Of course anything medical was not my choice and is still out of my control, thus circling back to this whole big life decision, but I am slowly adjusting to all of this space and it is definitely a winding road adjustment. 

Fortunately, the feeling that consistently bubbles its way to the surface, no matter how “in my head” I get, is gratitude.  I realize I am fortunate to be in a position to be able to make a decision about my employment at all.  And to be able to take a step back while I am still feeling healthy and increasingly optimistic about my chances to hang on until some really good treatments become mainstream is truly a blessing.  I may not appreciate and cherish it everyday the way I probably should, but I ultimately realize that I am lucky and have been given a gift of time that I will never take for granted.